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Stuck Between Floors A Blind Introvert’s Pandemic Pickle

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HEALTH & WELLNESS

“We are not all going through this together but we
can be there for each other.”

~Kimberley (Kym) Dekeyrel

A Real-Life Claustro-germophobic Nightmare

As a highly sensitive introvert, one would think ‘physical distancing’ would be heaven right about now, right? Wrong! Allow me to elaborate.

For those who don’t know me very well, I’m an anxious and quirky person full of phobias, rules, and overthinking. Take elevators for example, whenever I get on one I try to prepare for how I’d react if it got stuck. In my imagination, I’m the calm, unflappable, take-charge type but I know the reality would be totally different. In reality, I’d be on the floor in the corner, rocking back and forth, sobbing and hyperventilating. I’m so fearful of being stuck on an elevator I’ve jumped off when too many people try to squeeze in. Honestly, doesn’t anyone care about weight restrictions?

Then there are microbes. Microscopic anything, especially germs, sends me straight over the edge. Heck, when I learned dust mites existed I had nightmares for years; seriously, some things are best unknown. Obsessive hand washing has been my norm for as long as I can remember. So imagine my distress when a global call was broadcasted telling everyone to wash (I mean, really, really wash) their hands—EEWWW! And don’t even get me started on cell phones and bathroom stalls—I just can’t! The more important question however is, what were people doing before the Coronavirus (COVID-19) outbreak? Nope! I take that back I don’t want to know.

Even though I avoid germs like the plague (granted I probably coulda used a better reference here), I contracted H1N1. Yup, the same year I was declared legally blind I caught swine flu. The odd thing here is no one else in my inner circle, including family, friends, and co-workers, caught it.

On Physical Distancing & Social Isolation

If being an introvert weren’t enough, here we are in the midst of a global pandemic and I’m beside myself, literally. Social isolation isn’t anything new for me because this is my comfort zone! But here’s the thing, when all of my neighbors are also safe at home it sort of defeats the whole purpose. Not to mention the anxiety-inducing walking of the dog or checking for my mail. My preference would be for my dog to check the mail while walking herself but she’s a little diva. Then there’s my brother.

I never thought I’d see the benefit in my brother’s passenger car door not working until now. While we aren’t six feet apart as I ride in the backseat, I’m lovin’ it! That is until he asked me: “do you need to stop by the grocery store?” Now keep in mind, I live alone and my sons have been great at physical distancing-thank heavens. Even though I’m an H1N1 survivor, asthmatic with hypertension my brother seriously asked if I needed to go to the store. So against my better judgment, of course, I said yes, I needed groceries! When all I really wanted to do was to go home or at the very least sport a blinged-out hazmat suit. 

Here I was with my white cane trying to keep up with my brother wishing like hell I was anywhere else. Then the unimaginable happened; I lost him. I must have been looking quite disoriented because this older gentleman asked me if I needed help. Choking back tears all I could think was ‘please step away’ but I held my composure. Eventually, my brother came to my rescue and all was right with the world, well, almost.

One Heck Of A Pickle

In life as far as pickles go, this pandemic is off the charts. Going through a pandemic as a germaphobe introvert with sight loss is extraordinary. Before sight loss I went to great lengths to avoid invisible threats, barely stopping short of ordering a personalized glass bubble. Who am I kidding? A glass bubble wouldn’t work well with claustrophobia—Duh!

Seriously though, when you rely on navigating the world through touch, sight loss during a pandemic is extremely difficult. I’ve been more aware of my sense of touch, my sight loss, and germs since the beginning of the outbreak. Hyper-awareness comes with the territory when you lose your sight, thus making physical distancing an additional burden. From the time I wake until I go to sleep at the end of the day, I’m always ON which triggers my anxiety. When I’m safe at home these anxiety levels, for the most part, are bearable. However, the moment I go outside just to walk the dog, my internal alarms are activated.

If managing sight loss, germophobia, and physical distancing weren’t enough, try doing it as an introvert. I’ve always needed my space and now more than ever I’ve had to put in place additional boundaries. Since most people rely solely on communicating virtually, I feel sort of trapped and have to shut down mentally and physically. It seems like I need to recharge my batteries more frequently which leaves me feeling a great amount of shame.

A Rock And A Hard Place

You know the feeling you get when you’re on the top of your game? Well, the feeling I have right now is the exact opposite. At the risk of sounding melodramatic, I think the appropriate terminology is “rock bottom.” Yes, I’m feeling a heaviness, scared, overwhelmed, powerless, and my thoughts are so chaotic I think I’m losing it. The mere action of typing these words provides some relief because I’m acknowledging my vulnerability. Now is not the time to pretend I’ve got it all figured out. Truth is I don’t and I’m more than sure I’m not alone.

Last week was particularly difficult and it wasn’t until I read one of my favorite blogs that I understood why. I was wearing shame like a blanket and once I was able to name it the clouds began to clear. This “stuck between floors” feeling may last through the entirety of this epidemic and I understand it’s natural to feel some angst.

I’ve been cycling between the basement and the top floor really since before the outbreak. The important thing for me is to keep things in perspective. Fear won’t solve anything and, when I can, the way I combat it is to practice being present. Some days I don’t have the energy to wrestle with my feelings so I give myself permission not to.

Owning & Respecting The Pandemic Journey

What I find helpful is respecting other people’s personal journey especially through these extraordinary times. A friend of mine put it this way: “We are not all going through this together but we can be there for each other.” We have to be mindful that everyone isn’t experiencing this global event the same way. Remembering our humanity by exhibiting kindness, compassion, and patience will help ease our burdens. 

Enjoy the little things because it’s our moments that matter most. All we have is right now and we can choose how we will spend it. Take care of yourself and your loved ones. If you need some helpful tips about COVID-19 Abby recently shared this post: Navigating The Coronavirus Turmoil In Kindness.

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A photo of a woman behind a frosted glass wall. Her face and body can barely be seen however her hands are braced against the wall like she’s trapped.

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Living Life Boldly & Transforming Perceptions

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BEAUTY BUZZ & BLOG BIZ | ADVOCACY

Editor’s Note

Last year was tough. My best friend was diagnosed with cancer, another very good friend died unexpectedly, and I had to deal with some significantly unresolved fears. Yet among these struggles, there were always glimmers of light; standing up for my friend, continuing the work my other friend believed in so deeply, and coming to terms with myself.

One of the best gifts I received last year was a connection with Tony Koros at Grotto Network and the opportunity to share part of my story. Here is the video he created along with the transcript (below). Thank you, Tony, for spending my birthday with me and working with me to film this footage. And thank you Grotto Network for making this possible!💛

“When we are out here living our lives, we are bold. We are embracing our blindness. We are blind and we’re beautiful.”

Blind Blogger Transforms Perceptions of Beauty

Video Transcript

Grotto Network

Meet Stephanae McCoy: Blind Beauty Blogger

Pittsburgh, Pennsylvania

Stephanae: Beauty is seldom associated with blindness. Beauty is seldom associated with disabilities, or people with disabilities. I wanted to change that.

I was looking in the mirror and I took out my right contact lens. I’m looking up in the mirror and all of a sudden, because I still had my left contact lens in, my face was gone. There was just no face. I’m like, “Whoa.” My whole feeling about the process of going blind was: If I’m going to lose my sight, I’m going to do it my way.

We can do anything that we want to do, provided we’re given the tools to do it or we learn a different way of doing it.

Stephanae created a blog called “Bold Blind Beauty.” The blog celebrates blind and visually impaired people, and shares Stephanae’s tips on makeup, style, and beauty.

(Applying makeup in a mirror)

Most of the time I’m not even in a mirror when I’m doing this, but old habits die hard. Even when you can’t see, when you can no longer see, you still want to use a mirror sometimes. At least I do.

For me, becoming embarrassed by other people standing around watching me is huge. When I’m in an unfamiliar area, sometimes, even though I’ve been using a cane now for years and I feel like I’ve built up my confidence and I feel like I’ve got this thing down, I sometimes get so overwhelmingly afraid that I panic.

We need to change the way we look at people with disabilities. The way we’re doing it now, we’re looking at the tools that they use to become independent, but we’re seeing them as a crutch, as opposed to a tool of independence.

I created Bold Blind Beauty so that we could change the perception of how we view people, period. I just would like to see us be a more inclusive world for everyone and accept people as we really are, stripping away the outside and getting to the heart of who we are as people.

But when we are out there and we are living our lives, we are bold. We are embracing our blindness. We are blind and we’re beautiful. We’re beautiful because we’re out here doing that, living our lives.

Following Grotto Network:

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A selfie of me taken in the doorway to my condo, sporting my stubbly bald head. I’m wearing a black v-neck tee that says “Warrior Life” in white text.

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When Passion Is Palpable One Must Pursue It

“The one thing you have that nobody else has is you. Your voice, your mind, your story, your vision. So write and draw and build and play and dance and live as only you can. The moment that you feel that just possibly you are walking down the street naked…that’s the moment you may be starting to get it right.”

~Neil Gaiman

Advocacy can occur on many levels from creating a massive movement to a simple blog but it all begins with a passion for positive social change. When I was asked to participate in an upcoming event to bring awareness to the abilities of people with disabilities I couldn’t say no. 

Disability InSIGHTS is a seminar designed to increase awareness of the abilities of people living with disabilities. I will be one of 7 speakers who will share stories of triumphs, obstacles, and breaking down barriers. More on this in a moment.

Typically when we hear stories of people who are on the front lines of social justice the conversation revolves around passion. There is something that ignites the fire within us to create positive change. While it’s true passion has a defining role in our advocacy efforts we seldom talk about another major player—fear.

Working Through Fear

Fear is universal and yet many times when we talk about success fear isn’t a major topic of conversation. I’ve lived a life of fear and a life of overcoming. Losing my eyesight was one of my greatest fears that I never thought I’d be able to accept. However, it was my fear of blindness that in part prompted me to create Bold Blind Beauty. 

Fear was the reason why I declined an all-expense-paid trip to Kansas earlier this year. Even though the opportunity to empower blind & visually impaired youth was seductive I just couldn’t let go of my fear.

The thought of traveling out of state on what would be my first solo flight after my sight loss terrified me. Questions swirled around in my head like:

  • would I know where to go once I was dropped off curbside at the airport?
  • what if the assistance I requested ahead of time wasn’t available?
  • would I have a panic attack because everything I see is indistinguishable?
  • what if I had to use the restroom, would I get lost?
  • would the flight attendants show me to my seat?
  • since my trip connected through another airport what would that be like?
  • what would I do if I encountered problems because people doubted my disability?
  • how would I handle the prospect of being stranded?

With all these questions and more, you’d think I’d be satisfied with declining the trip but I wasn’t. Truth be told I was still unsettled yet I couldn’t articulate why. Thankfully, I was given another chance, this time I said YES! and I went to Kansas.

The Cumulative Effect

The Kansas trip was only the beginning of all the wonderful things to come this year as a result of my work at Bold Blind Beauty. While I’ve been blogging for nearly 5 years I cannot tell you the number of times I’ve questioned myself as to whether this is a fruitful effort. Then last year I partnered with advocate extraordinaire, Chelsea Nguyen, and together we founded CAPTIVATING! Magazine, a free, accessible online lifestyle magazine. CAPTIVATING! provides monthly content about culture and style for people of all abilities proving that inclusion is limitless.

As a result of my partnership with Chelsea, and my work with Bold Blind Beauty I’ve enjoyed these amazing experiences:

Next, in the lineup of this year’s events are:

My trips to Kansas and Utah were sublime. CAPTIVATING!’s award from the Texas Rehabilitation Association was a delightful and totally unexpected surprise. Then filming the behind the scenes story of Bold Blind Beauty last week was extraordinary. 

I’m eagerly anticipating the Disability InSIGHTS Seminar where I can share my tips on the path to social entrepreneurship. This event is being held in recognition of International Blindness Awareness Month and National Employment Disability Awareness Month. It will take place on October, 18 from 11 am – 3 pm at the Tom Ridge Environmental Center in Erie, PA. 

Seeing The Beauty In People

I believe everyone has value. I also believe our perceptions of people can get in the way of our ability to appreciate their value. For far too long we’ve looked at people who are ‘different’ from ourselves and immediately leap to conclusions without knowing their story, without knowing them. When we add disabilities (visible and invisible) to this equation we become ‘experts’ in determining their worth and it isn’t fair nor is it right. 

We all have moments of insecurity, uncertainty, and fear. I nearly let my fear keep me from life-changing events where I’ve learned so many valuable lessons. None of this means I won’t ever feel uncomfortable or downright scared. However, when I ask myself why inclusion, accessibility, and representation are so important my passion will continue to help me push through my fear.

Courage is contagious and when we share our vulnerabilities it empowers others. How about you? Can you think of a time that fear nearly prevented you from meaningful achievement? 

Disability InSIGHTS Information:

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Carla The Exuberant Chief Communications Officer

Carla The Exuberant Chief Communications Officer

Hello, I’m Carla Ernst’s publisher and I’m contacting you because I know she was involved with Bold Blind Beauty. I’m very sorry to tell you that she passed away a couple of days ago.

Image of Carla and her white cane is described in the post.
Carla With Her White Cane

I’d just come home from visiting my friend who was recently diagnosed with cancer. The stress is palpable as I’m working on getting the June edition of CAPTIVATING! issued. I heard the email notification on my cell. Figuring it was one of our CAPTIVATING! team members, I glance at it and the next thing I know I’m screaming.

When anyone calls the Bold Blind Beauty 800 line it automatically sends a transcript of the voicemail. I thought this has to be a mistake when reading the transcript. So I open the email on my 32-inch monitor, then read and re-read the message. Comprehension slowly creeps up on me as my heart is breaking—Carla is gone!

Gosh, just writing this brings it all back—the tears, sorrow, and devastation of losing someone so close to me. While it’s been two weeks since she died a very large part of me still can’t believe she’s gone.

Exhuberant & Extraordinary Carla

I met Carla on November 10, 2016, right here on Bold Blind Beauty. It all began with a comment she left on one of my blog posts:

You look fab Steph! (I’m trusting my sighted girlfriend Ann who told me so). I lost my vision several months ago, but I have not let that negatively impact my sense of fashion one bit. I wear a lot of pencil skirts too, but I’m thinking of upgrading to pen skirts. Way more permanent. These pencil skirts could erase. Which would not be good because they have a no-nudity policy here in Milwaukee.

~ Carla Ernst

How was I to know that this one comment would lead to such an extraordinary friendship? The funny thing is, Carla and I never met in person. Yet this comment was the beginning of something very special. The comment led to an email which in turn led to a phone call that completely changed my life.

It’s so interesting how meaningful relationships can evolve while living in the virtual 24/7 world. My friendship with Carla was such a relationship. From the very beginning, her corny sense of humor was contagious; I remember telling her she should become a standup comedian. In addition to being a person who could make you laugh non-stop, Carla was extremely intelligent and uber professional.

Writer Extraordinaire

My relationship with Carla was life-changing because she clearly understood my passion for advocacy. Because of this understanding, she offered to help me to improve Bold Blind Beauty.

In a matter of months, we consolidated messaging and websites. If you’ve been following Bold Blind Beauty for a while you’ll remember there was a separate online store. The standalone online store was named after Abby our fashion icon. Then there were individual social media platforms for each site which made things a little hairy.

Carla’s offer to create a concise message made me feel a little; no, I was actually extremely uncomfortable. Living on disability means finances are tight and I knew I couldn’t afford her services. Here’s the kicker though: when I told her I couldn’t pay her she said all she wanted to do was to help. Who does this in this day and age?

Carla wasted no time developing a strategy She:

  • wrote Abby’s story and rewrote my bios (I now have several from which to choose)
  • hosted two focus groups to gather data to learn more about our audience
  • advised me to create a Steering Committee
  • updated the site’s structure to make more sense
  • helped me consolidate the obsolete Abigale Style into Bold Blind Beauty
  • contributed tons of content to Bold Blind Beauty
  • represented Bold Blind Beauty as Chief Communications Officer
  • presented endless ideas the most recent was giving Abby a voice

As a communications guru, Carla’s passion for writing could only be matched by her advocacy. She had a heart for volunteerism and gave so much of her time and talents to organizations who help improve the lives of others. What’s ironic about me writing this piece is I feel like I cannot do her justice.

What Carla Taught Me

Acceptance has to be one of the most important takeaways from my friendship with Carla. Remember how I said I met her in 2016? It wasn’t until last year that I learned something about Carla that hurt me to the core. Her memoir, Life Without Pockets: My Long Journey Into Womanhood, was a subtle hint.

I read Carla’s book in one sitting. It was excellent. As soon as I finished reading it I called her. While I can’t remember our exact conversation what I do remember is how badly I felt for her. To be clear, learning that Carla was trans was not an issue for me. Instead, I was hurt that she thought if I knew it would turn me against her.

Carla and I would talk on many subjects the majority of which focused on preconceived notions of others. Blindness was a great starting point, I think because of the many metaphors on the topic. For example, when you can’t see how a person looks it doesn’t matter— it’s about character.

However, in Carla’s defense, I get it. Being a member of several marginalized groups myself I understand how much it hurts when people cannot accept you for who you are. The beauty of Carla was that she didn’t place conditions on her friendships. She was 100 percent the real deal and I’m so beyond honored to have known her and call her my friend.

Moving Forward

I talked to Carla two days before she passed away and we had such a great conversation. She wasn’t feeling well; hadn’t been for that entire weekend but she wanted to share some ideas with me.

Being who she was, Carla was also a CAPTIVATING! team member and had big ideas on how we could further impact the world. We talked by phone at least twice a month and no matter what was going on in her life, Carla was positive.

I’ve always believed the majority of the world is full of very good, well-intentioned people. People like Carla reaffirms my belief, yet it would be reckless of me not to acknowledge the hatred. Hatred is the reason why Carla was hesitant to tell me her story and no one should ever feel this way. We are all human and we all struggle. For those who cannot feel empathy for others, you’re the ones missing out. Nobody knows what’s in store for each of us but I’ll tell you what it’s far easier being kind and compassionate than filled with hate.

Everyone has biases but until we get to know one another, I don’t understand how we can feel dislike towards another. Carla, I will forever be grateful to you for bringing so much light into my life. You are a bright star and I will miss you terribly my friend. I love you. RIP

It takes a minute to find a special person, an hour to appreciate them, and a day to love them, but it takes an entire lifetime to forget them.

~Unknown

Featured Image Description:

A headshot of Carla with auburn hair and she’s wearing a black top.

  • The second image is a black and white full body shot of Carla posing with her white cane. She is wearing a floral dress with floral patterned hose.